Jayz

At the risk of hijacking the thread, I am curious about the likelihood of passing from genitals > partner's mouth. There's a video with Adrial and others chatting with a doctor. I haven't seen it in a while but as I remember the doctor basically dismissed it as being such low probability that it was a non-issue. "Non-issue" sounds like almost zero. Is that the general feeling? My question isn't about disclosure obligations, except insofar as the informed consent is based on - what? "Don't worry, it's a non-issue, we can do this"?

Re: Westover Heights Clinic (not to hijack the thread . . . ): When I was diagnosed last summer I had really great advice from my really great dermatologist in Portland, whom I see regularly for skin exposure checkups. At some point I went to see someone at the Westover Heights clinic - a PA I think? Or an ND? I talked to two different people there and they were great too, but she asked why I came there and I said I wanted to have an ongoing relationship with a clinic to be able to prescribe antivirals and generally give me the best advice. And everyone says they're the best and they're on the cutting edge of research and all. She said (and I might not have this exactly right but this is the idea): to be honest, the clinic was founded by a doctor who was on the cutting edge but that person or persons left long ago, and while the staff there are totally top notch and follow all the latest info, I am just as well off staying with my dermatologist (whom she knew by name), because she's great and also stays on top of this. I had thought the W Clinic, as specialists, would be more knowledgable. I mention this because people here from around the country seem to hold out that clinic as the ultimate authority . . . . Not to take anything away from the Westover Clinic, but if you live across the country I wouldn't make a pilgrimage to Portland, or even make a telephone appt, if you have a good doctor or clinic in your home city. It's certainly nice to be able to have a face to face with someone local. I hesitated to make this a new thread because I don't want to take anything away from the W Clinic, especially since she was so forthright with me. And I hope that I paraphrased the gist of her conversation accurately enough.

My understanding is that the percentage (e.g. 5% or 10%) actually means the risk of transmission in a year, assuming you have sex more or less twice per week. That suggests that the "percentage" is actually much smaller for any one encounter. However, I've read (skimmed) the study that this comes from, and it seems a pretty skimpy basis for these "percentages." And I don't think there is much else in the way of studies. I've had this discussion with someone at the Westover Clinic. So I'd be cautious at getting hung up on these percentages. And I realize your original question was for anecdotal stories from forum users - I also sought anecdotes because I wanted to get a sense of whether people's experience is consistent with the study. We didn't really get that answer.

Thanks! If someone gets 1 on their genitals does it act the same as 2 down there - in terms of outbreaks etc? In other words are the ramifications the same or does it tend to be more asymptomatic?

Ok, I know this has been discussed but I can't find it and needed a refresher. I have been diagnosed with I and II. I've never had an oral outbreak but I assume the I is in my mouth, right? II is on my genitals. I am wondering about me giving oral to someone, and also receiving. There's a video with Adrial speaking with a doctor, and the subject comes up. I believe the doctor was saying that since genital doesn't like the oral environment, and vice versa, that it's a "non-issue" and disclosure (or protection) isn't needed. But that couldn't be right, could it? I must be mistaken. Can someone refresh us all? Wondering about the risk of me spreading I from my mouth to the woman's genitals. And her picking up II in her mouth from my genitals. Sorry to repeat this issue - but it's good to review, right?

It's absolutely amazing! It can change your life. That said - it's not for everybody. There's the part about living like a refugee camp in a raging white out dust storm. But then there's the amazing art, amazing people, amazing utopian community . . . no commerce whatsoever, no spectating - everybody participates. It's not passive entertainment like a traditional festival. Anyway, we're packing and organizing and trying on outfits. Very excited! Good to forget about the - you know . . .

No, I didn't mean they'd test negative. I meant they've never had a test at all and have no idea they might have it because they've never bad symptoms (or more likely, the symptoms have been so mild they haven't noticed them).

Actually an asymptomatic carrier may not have even tested positive - they may have no idea they are a carrier. Studies suggest that of the people that are infected with HSV-2, 90% of them don't know it!

We could have our own Opportunity Weekend (or week, actually)!

Right, well, I'm interested in anecdotal evidence since I've read the stats and the underlying studies are not really that thorough. Dancer and Adrial have both been in three-year relationships without condoms and not transmitted. I'm wondering if Hope has done the same, successfully, for a 20 year marriage. That would be extremely encouraging!

Yes, it is nice to hear from a veteran. At the risk of hijacking the thread I'd like to ask a question: do you use condoms in addition to the antivirals you take? I'm 55, newly diagnosed and in a committed relationship. I'm taking antivirals but hope there's a future of no condoms for us. Thanks!

Ha! And I think I tore my rotator cuff windsurfing! Seeing an orthopedic dr this afternoon. Ouch!

I'm sure this will pass, just hang in there! You might always have HSV, but these weird outbreaks and erythema, I'm sure that will pass. Then it will all seem like a bad dream in the past. I had lyme disease for a couple of years. Yikes - you should see the online forum for those guys! Talk about feeling abandoned by the medical establishment. The helplessness and suffering, and feeling of incurability. But I did get over it . . . Then seven years ago I was diagnosed with Crohn's disease and they said it was incurable. Again, the online support forums are pretty bad - people having surgeries to remove parts of their digestive system, people on really restricted diets and limited freedom. Now - as of last week! - they say I don't have it anymore. I never know what to believe. My point is that we often get freaked by our current health situations but then we adjust to our new reality, and often/usually the worst of the symptoms pass. And then it's like it was all a bad dream. I have no doubt your beautiful legs will be just that once again!

No! You're frustrated and scared, I don't blame you. This is a supportive place and we're here for you. Don't feel you need to hold back. Just try not to bring yourself down too much - you don't need to suppress your feelings but your health will be better if you can reduce stress and negativity. Easier said than done, I know . . .

No, I did not have any muscle ache or pain associated with it. The doctor didn't mention disseminated herpes. It was very clearly HAEM. The bumps started out like warts or mosquito bites - not a different color, just bumps (and itchy!). They kept me up at night. Then they started to turn red, like blood (that's the erythema). They were never like fluid-filled - no blood or puss or anything. I would not describe them as lesions, not at all like the genital OB. But the red blotches got much bigger than the bumps themselves and that's what you'd see on my hands: red blotches, more than the actual bumps. They didn't need medication and started to resolve themselves quickly. Once the itchy stopped after four days or so, it wasn't a big deal. It looked gross but only for about four or five days, and I wold keep my hands down and not shake. I am really sorry for your suffering and fear - hopefully you'll get some answers. Let us know!

I had HAEM - herpes associated erythema multiforme. My dermatologist assured me that it is not contagious - it is not the same thing as herpes lesions. Are you sure that's what you have though? Here's my story: June 24 I had my first OB of genital herpes. I was in Ecuador, scuba diving at the time. I didn't know it was HSV until I got home and had the PCR test. Ten days after the OB I woke up with itchy bumps on my fingers, which kept getting worse until they were all over my legs and hands (not much on actual palms). I went to the ER (it being July 4th weekend) and the Ecuador trip got them thinking of water parasites and things like swimmer's itch. A day later I saw a local dermatologist (my regular one is in the city an hour away and harder to schedule on short notice). I told him I was recently diagnosed with HSV, and also about the Ecuador trip. He literally waved off an HSV connection, ran through a lot of possibilities, and was also stymied. So I did get in to see my regular dermatologist, on the 8th - three days after the bumps appeared. I had been taking benadryl to help with the itchiness. It looked horrible, with red splotches and bumps all over my hands and feet. She started asking subtle questions about possible HSV signs and I told her I had just been diagnosed. She had immediately suspected HAEM. When I told her the other dermatologist hadn't figured it out she said "but this is classic!" - she was onto it right away. She did assure me that it was not contagious and it would heal without scarring. By the 4th day the itching had subsided and by the 6th day the red splotches/bumps had gone down enough that they weren't so immediately apparent (it helps that I have freckles anyway). By ten days they were really going away and by two weeks or so they were gone with scarring. I am a male. It is typical that the HAEM appears about 10 days after an HSV OB, like mine did. I understand that 20% of HAEM case are recurring. I hope not! I also hope I have no more HSV OBs. At least I'll know what it is know that it passes relatively quickly. I have a bottle of valcyclovir ready if I feel an OB coming on. I am taking acyclovir 400 mg daily, because I am in a relationship and want to minimize the chance of transmission (the HSV, that is). One lesson: find a good doctor! the first two couldn't figure it out (I don't fault an ER doc though) but the third doctor knew right away, and knew all about it. One question: has HAEM been diagnosed? I don't think neck and legs sounds like it - it is typically just hands and feet. Also -even my super busy doc got me in on short notice - you can't get a sooner appt than a month away? Good luck and let me know if I can answer anything else about it - I haven't seen HAEM discussed on here (but I haven't looked).

I tested positive through swab at the OB site, which is up near the tip (well-protected by condom). I traded messages with my Dr., who said that test (PCR) doesn't tell you 1 or 2, but he "assumes" it is 2 because it is on the genitals. I assume too but want a blood test to confirm, one way or another. My GF had a full STD panel done when we started dating and was negative. Now I hear that they don't always include the HPV test, and she doesn't remember if hers did. Regardless, she plans to get tested again, obviously, as do I to determine 1 or 2. Yes, I understand that I - we - need to be extra careful this first year or so for the reasons you stated. Question: Does shedding occur in the same site as the OB? If so, I am glad that the condom covers that area very well.

WCSDancer - thanks for your story, I gather you've been living with this a long time and have followed all the research. Glad to hear you can have 3-yr relationships without condoms and not pass it on. I still worry though - I thought I read studies that said that even with condoms and suppressants the risk is, what, like 4% or so? Are there studies about the % without condoms? What risk were you (or your partner, really) willing to take, or did you count on being aware of impending OBs and hope you weren't shedding? Even at 4% - that's one in twenty five. meaning out of every 25 times there's likely to be one time that the other is infected? If I am intimate for, say, 25 years with my partner it's bound to catch up to us, and I don't want to do that. (Although I'll be 80 in 25 years, but hey . . .!) Or am I looking at the numbers - or the realities - wrong?

I've read the literature and links about safe intimacy within discordant couples (one is infected and the other is not). I'd be curious to hear anecdotally if you or anyone you know has decided to forgo condom use, and under what circumstances . . . and if the partner stayed HSV-free. I'm 55 years old and in a close monogamous relationship that we both plan to continue forever. I'm recently diagnosed after primary outbreak. I'd like to see how my body responds in developing antibodies and what kind of pattern of recurrence (if any!) and severity I'll have. That said, at some point I hope to be able to forgo condom use, with or without antivirals So I'd like to hear from anyone else that made that decision. (PS she hasn't had a test yet but our assumption is that she is uninfected . . . but we'll see.)

Assume both partners have genital HSV-2. Can we just proceed without protection (assuming that's the only concern, not pregnancy, other STDs, etc)? We wonder if there are different strains so we could give each other a new strain? Or if we each have it in a certain place on our genitals, can we then pick it up in new places from our partners? Or other considerations? I've looked through this site and didn't see this discussion anywhere, thanks everyone!